Katie Hill had wanted to stay happy taking care of her house, husband, two daughters and son. In December, a rare and sometimes fatal disease known as pulmonary arterial hypertension ended the 30-year-old’s life.
Pulmonary hypertension is a vessel disorder of the lungs in which the pressure in the blood vessel that leads from the heart to the lungs increases to life-threatening levels, according to the Pulmonary Hypertension Association.
Flying for a Cure is the second annual fundraiser sponsored by the Oklahoma Pulmonary Hypertension Support Group to raise funds for biomedical pulmonary hypertension research and awareness. The public is invited from 9 a.m. to 2 p.m. Saturday in Mitch Park to support the Pulmonary Hypertension Association.
“This particular kite festival is being held in her memory,” said Duana Newcomb, Hill’s mother. “It was her desire to definitely keep this going. We’ve got to find a cure.”
Newcomb and her daughter founded the Oklahoma Pulmonary Arterial Hypertension Support Group in 2006. She said the family event will include kite flying demonstrations and a kite decorating contest for children. There will be refreshments, clowns and inflatables, belly dancing, music, a silent auction and door prizes.
“We want to raise awareness. Until Katie was diagnosed, we had not heard of this disease,” Newcomb said. It is a disease that affects people of all ages and ethnic backgrounds although some people are more prone to developing pulmonary arterial hypertension, according to the Pulmonary Hypertension Association.
Hill’s troubles began four years ago when walking her son through the neighborhood during Halloween. Shortness of breath and an accelerated heart beat puzzled her. By January of 2005, Hill began fainting.
“I’d sit down on the couch and my heart was racing,” Hill said in a 2006 interview with The Edmond Sun. “I felt I had just run a mile.”
She was diagnosed with pulmonary arterial hypertension in 2005. Hill and her family were stunned by the news because she didn’t fit the common profile of people contracting PAH. She learned PAH usually is caused by secondary diseases, a family history or the use of the Fen-Phen diet pills — none of which fits her medical history.
Hill’s family learned in December that genetics caused her daughter’s fatal disease. Now, Newcomb worries that her grandchildren are at risk.
The only cure is a double lung transplant or a heart and lung transplant, Newcomb said. The day before Hill died, she had spent the day volunteering at her son’s class at John Ross Elementary School. She never became critical enough to be on an organ donor transplant list that might have saved her. Her condition progressed too rapidly to add her to the organ donor list, her mother said.
More awareness and support is needed to quell the uncertainties posed by the disease, Hill said in 2006, while planning for her support group’s first fundraiser.
“I know Edmond gets behind events like this in a big way,” Newcomb said.
jcoburn@edmondsun.com | 341-2121, ext. 114
